Trish Low, RN, BSN Coordinator, APDA Information & Referral Center, San Gabriel Valley, CA
Diagnosed at 39
My name is Trish, and I was diagnosed in March 2004, at the age of 39, although I am certain that I have had PD since I was 35. Along with the diagnoses of PD in 2004 I was also diagnosed with Chronic Lymphatic Leukemia - so my life has had its challenges.
I remember the day I was diagnosed. I was in the waiting room, anxious although I already knew and had feared it all along. The doctor lacked any bedside manner and got irritated with me when I was doing the Neurological assessment. I was trying real hard but was flunking. Then I remember thinking, "Why is he talking to my husband? I'm right here?!" He said I had Parkinson's and it became real.
You see this is not my first encounter with PD; my Dad was finally diagnosed at age 40. But back in the '70s there was no education of the patient or family, let alone Support Groups for Young Onset patients or their caregivers.
So, while I quickly educated myself, I had nausea and vomiting every day for six months on Requip. All the doctor kept telling me was that I would get used to it. When I lost control of my bladder he said that I must have a bladder infection, that this condition didn't meet the profile. But there is no profile! We are like snowflakes - PD affects us all differently.
In December 2004 I went to a Support Meeting at Huntington Hospital and Dr. Jai Hyon Rho was the speaker. I spoke to him after the meeting and discussed my situation. I took his card and went back to my insurance company determined to jump through any hoops necessary to get to transfer to Dr. Rho.
After the first visit I was so happy! This doctor truly cared about his patients and I knew I was going to be OK! During the past five years he has seen me through a zillion drug changes (switching from one med to the next, increasing or decreasing dosages, etc.) and four DBS surgeries.
Just so you know what a unique case I am; I had my first (left side) DBS in March '06 and then the right side DBS in March '07. At Thanksgiving '07 I had a fall and broke my right foot and right stimulator so I had surgery again January '08. For whatever reason the lead on the left side broke and in February '09 I had my fourth surgery. I hope and pray that it was my last - the surgeon assured me that he anchored it really well this time. This last surgery was the hardest on me - edema, headaches, severe rigidity and tremor. Thanks to Jennifer, the NP, who worked patiently on the programming and Dr. Rho adjusting meds again I am still working, driving and being a mom and wife.
My passion in life has always been to care for people. Although a year ago I could no longer continue to work as a Neonatal RN, I have grown into my new role as a Coordinator for the American Parkinson Disease Association, still living my passion taking care of my fellow "parkies".
My advice is to live for today and be thankful for every small blessing. I know as my PD progresses that my Lord will give me the strength to continue to fight back one step at a time.